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• July 7, 2011 10:54 a.m.

  I have stage 3 breast cancer. One year past removed breast and lymph nodes. Could not take Tamoxaphen for the five years recommended due to bad side effects. Cancer Dr refused to do a Pet Scan since and I quote" Since you won't take the medication you have low regard for you life and I see no need to order it". Some Cancer Drs are not kind and don't listen to what the patient says. I don't know if it has spread or not. Just live each day and enjoy it as best I can.

  - Carole

• July 5, 2011 12:36 p.m.

  I thought I would post a couple of book resources for planning a memorial service, since Arianna had this question, and others may find this helpful. Take a look at Remembering Well by Sarah York, or Celebrating a Life: Planning Memorial Services and Other Creative Remembrances by Faith Moore, 2009.

  - Sheryl

• July 5, 2011 10:27 a.m.

  I can relate to Laurie's comment about friends and family not wanting to talk about your death. I was told over a year ago that I was terminal. I then responded unexpectedly to some palliative radiation tx.. I have been told my cancer is likely to return. However, I have also had more than one Dr. tell me that God is keeping me here. I really do believe that I just might make it, and have felt that way all through this long process. I was pretty much at peace with my pending death last year since I have a strong faith even though I'm not a church goer. I planned my memorial service. Financial affairs are in order. I have told friends and family I love them and what they mean to me. I took some trips. So why am I having a more difficult time now when my prognosis is somewhat questionnable. The not knowing is part of it. The other day I realized it's ultimately because I don't want to hurt and cause more grief to my family and friends. I also feel my life is a bit in limbo. I'm not well enough to work yet I'm a bit restless. I do activities but limited. I am thankful for every day yet uncertainty of the future is always in the back of my mind. Living day to day helps the most. I just get off tract at times.

  - Gail

• July 3, 2011 2:13 p.m.

  It's really helpful to read other people's thoughts on this subject and to know that I'm not alone in the way I feel. I have bilateral breast cancer and lymph node involvement and I know my prognosis is poor but family and friends refuse to discuss it. I feel I have to live in denial, never mentioning it for fear of upsetting them and they think I'm being negative when I try to discuss the things I want to put in place I think I'm being practicl and realistic but i'm in a very lonely place right now (I live alone)as no one seems to understand what I need.

  - Laurie

• June 30, 2011 3:17 p.m.

  It is wonderful to read all the comments; I experience a family who doesn't even ask how I am doing, but I do have lots of friends, thank God. I do have pre-planning done. I have stage four small cell lymphocytic lymphoma (in bone marrow), diagnosed in June, 2009. I had Rituxin in September, 2010, and then fell experiencing a communited fracture of radial head of my dominant hand, requiring open reduction and placement of locking plate and screws. I blamed Rituxin for weakening bones. Since then I changed oncologists again (have had five now.) Really don't trust any of the oncologists I've had, including a second opionion in a major city. I am checked monthly, however, I question the validity of that now, as it feeds into my anxiety. I have a pretty good relationship with God, and am "Ready" when He wants me but would like to die quickly. (I am concerned about the declining stage.) My blood work always looks okay, and doctor can't feel lymph nodes, but they were only found with radiological exams anyway. I am concerned that after getting the disease "under control" in Sept., 2010, that this "watch and wait" idea is just going to let it go "full blast" again. Does anyone out there have SLL (which is actually like CLL (leukemia, rather than mine, which displays in lymph nodes.)???? Would love to hear from you and see how you cope with "watch and wait". I turn it over to God the best I can, do volunteer work, and go to prayer

  - Judy

• June 30, 2011 4:52 a.m.

  Back in 2004 my wife aged 34 developed stage 4 breast Cancer, but afraid to reveal to me that had a problem. Living in Indonesia many people say that they have a cure which we know is not true, after having the full treatment and 4 relapses developed liver cancer then lung cancer died in 2008. I knew two years before her death that only had a short time to live, I also suspect that my wife knew, but we never discussed it. She kept positive through a difficult and allways looked foreward to visiting the specialists for treatment. Aftwer a CTY scan in July 2008 and advised that no more treatment was available took the news calmly. It was then that the family were advised just how serious the situation was. She died 4 days after the CT scan at home. I was calm aS i was expecting it, just when did not know. How did I keep sane during the period of treatment from 2004 to 2008, I took up cycling and would daily go for my exercise about 15 KM. One cannot stay 24/7 with a cancer patient otherwise would go insane knowing that you cannot do anything to bring back full health.. I would recommend to any person who has to care for a cancer patient, find something that you enjoy doing and do it, if you become emotional then you are no use to anybody, and your own health will suffer, depression, weight loss and lack of sleep being just3 things that will happen.

  - Peter

• June 29, 2011 6:29 p.m.

  I have stage 4 Prostate cancer, Had luprin shots for 2 years, and for the past 3 years have had a Vantis implant, once a year. i spend at least 3 hours a day exersizing, walking, bike riding and lifting. i am 73 and feel very good. You have to work at it.

  - Bill

• June 28, 2011 11:04 a.m.

  I am a Chinese doctor, I was lucky to read this article and to be enlighten deeply. In China, breast cancer research is still very backward as very little government investment in this area. my blog is http://www.breast-cancer-patients.com. I would like to further exchange with you.

  - Fower Lee

• June 27, 2011 11:17 p.m.

  cheryl I have the same problem as most of my friends and family try to shut me down immediately when I bring up anything to do with my death.They most common comment is "don't be so negative I must have hope" I do not consider being practical neg.I have already lived almost 16 months longer than my FORMER oncologist said I would!! BUT ,,, I know I am going to die..short of a miracle it will be within the year. But right now I fell great I spend as much time as I can with those close to me and PREPARE has become my middle name lol I am doing the DVDs and have gifts bought. I have started to clear out my house of "stuff" sort pictures creating albums for my children. Sadly i do have to do it alone. What a gift it would be to be doing this with my family. Smiles, laughter and tears would be shared not kept hidden away. Don't they know how exhausting it can be to have to ALWAYS be on?

  - erin

• June 26, 2011 8:28 p.m.

  This is the most phenomenal post. I want to thank every posting for printing their feelings. The idea of the cd disc is great. I plan on trying that to show others that I am not in denial, I have only accepted whatever outcome is due. Hopefully my family will accept the fact that I am at peace.

  - Rita

• June 26, 2011 4:47 p.m.

  Would you kindly offer a referral of one or more books on planning a memorial service - not a funeral. Thank you ever so much.

  - Arianna

• June 26, 2011 5:59 a.m.

  At times I think we (anyone afflicted with a terminal diagnosis) are chosen ...live mindfully. At times to curse the disease but then forgive ourselves for being human. Now is the time to listen to ones self, accept the wisdom of others and let the rest go. The moments of clarity and acceptance are so peaceful, indescribable actually...enjoy your day everyone. This blog has become a support tool for many of us. Thanks Mayo Clinic people!

  - Cynthia

• June 26, 2011 4:31 a.m.

  It has been so helpful and inspirational for me to read all these comments at a time when I am feeling very negative about my prognosis. Although one knows all these things, it is wonderful to read about people putting them into practice and the peace it brings them. I will do the same now. Thank you all and bless you.

  - Binky

• June 25, 2011 8:49 a.m.

  CA gives one real chance to reflect about the life. The false ego which has taken over and fills our mind with incessant past thoughts won't allow us to know what we really are. Unless we let go of our attachments and find the illusion created by ego thru inner reflection and mindfulness, we won't know our real Self which is all Bliss and Peace. One has to die to the past every moment. Then Death of this body will not be a Problem.

  - Dhiren

• June 25, 2011 3:57 a.m.

  Thank You All for your input and also letter from TLC. I have Multiple Myeloma also. It is terminal I was told when I was diagnosed Feb.2010 and was on Chemo thru Aug.2010. Now I am in remission and hopefully for a long while my Oncologist hopes but I am always fearful when I go for my monthly checkup that it is back. I have tried to stay positive and enjoy my life as I am feeling pretty good. I am able to do gardening and shopping and my house work which I enjoy and travel. I have told my Hubby my final wishes but I can see sometimes He doesn't want to hear about it. I understand as it is very hard on him. All our children are married and We do everything together.I also would like to make the time and write down some letters to my Grandkids and other close family members to have after I am gone. I thank God everyday that I am still here and trying to enjoy my life each day. God Bless All of you.

  - Eileen

• June 24, 2011 4:44 p.m.

  Bless you, EJ, for so poignently expressing what others feel.

  - Pat

• June 24, 2011 7:37 a.m.

  My husband was diagnosed with lung cancer October 2010. After successful chemo his cancer came back within months with brain mets. We have exhausted options and now have to decide wether to continue searching new options or call Hospice. His oncology in our local small town said to stop treatment. It's a very hard decision to make. Any words of wisdom out there?

  - Lupe

• June 23, 2011 8:52 p.m.

  Thank you Sheryl & Mayo Clinic for providing this space. I wish I had a face to face support group but none exist where I live. My diagnosis is Colon CA and I have no evidence of disease after 2.5 years. My younger brother who just turned 50 is battling multiple myeloma and just had a bone marrow transplant. Because I am a hospice nurse I asked him to complete something called "Five Wishes" which is a document that allows all people to talk about what they want, what is important, it asks very good questions and helped me ask the hard questions about CPR, hospice care, how should we help his little girl who is 10 etc. At first he really struggled to deal with these issues but after we talked and he wrote things out he was very at peace with what might happen. I was very thankful because I did not want to decide for him, I just want to be his voice if needed. I recommend this tool to all of you, you can get it google "Five Wishes". As a hospice nurse I have always felt that patients know, accept, plan but it is very hard for family to be at the same place. Being a patient myself I can understand this because I know what I have experienced and that I think about dying when I go for checkups and think, well they might find something, it could come back. I have mentally planned my memorial service, I have planned to write my kids and grandkids letters for the future, my brother is trying to write a card to his daughter for all her birthdays, also a weddin

  - TLC

• June 23, 2011 7:05 p.m.

  I was diagnosed with stage IIIc ovarian cancer last Nov (2010). Chemo did its job, but I know what my odds are for recurrence. I'll be 52 in a couple of weeks and don't feel like I've lived my life completely, but have accepted I might not live as long as I want to. My husband gets very quiet whenever I try to discuss a future where I'm not here. I don't want to die before I'm 60, 70, etc., but the likelihood is there. I worry how he will handle life in my absence. I want to leave my daughters with a parent who will not mourn but rather celebrate our life together and help them cope.

  - Vicki

• June 23, 2011 6:30 p.m.

  This is a question for "Tom" who posted a comment at 11:15 a.m. I had a similar diagnosis of stage 4 prostate cancer in January. It would be helpful for me to know if you are getting Lupron injections and, if so, how that is working. Those injections seem to be working for me. I'm getting conflicting information regarding how much time we may have before our prostate cancer becomes really severe. I'm not in a support group but probably should be. JON

  - JON

• June 23, 2011 2:35 p.m.

  Thank you for participating in this blog where everyone can learn from each other. Even if you don't have much time or stamina, you can get the help of a friend or family member to tell the story of your life with photos. I have done this for myself, my husband and every member of my family that I have known. Only you can do this for yourself as you would like the story told. Put the photos together in order from birth until death. These photos can be put on a DVD, or CD with music of your choice if desired. They can be shown on a home computer or at a church or funeral home service. Or they can just be given to family members and friends who would like to have this memory of you. I have made videos for many friends, of their parents who have passed. But my own is ready to be copied and/or shown when my time finally ends. This has helped pass the time and is so appreciated by others. It can be your final gift to those who love you.

  - Mary

• June 23, 2011 2:33 p.m.

  Life is terminal. I've lived with some potentially deadly diseases for all of my 71 years. I'm surviving breast cancer right now. Thank God: my Doctor's have been good, my support system is good, & I focus on life because that's what we have as long as we have it. Tomorrow is a dream, yesterday is a memory, what we have is today. I want my todays to be the best todays I can possibly make them. God & living in today, gives me peace.

  - Ann

• June 23, 2011 1:51 p.m.

  Thank you everyone and especially to you Sheryl for letting people speak.

  - Diane

• June 23, 2011 12:03 p.m.

  I am 64 and have stage 4 breast cancer. I was diagnosed on May 2, 2009 and my husband 71 left me because of it and married a young woman 37 immediately after the divorce. I'm not only coping with the cancer but also the divorce. My living trust and will are completed and I feel very relieved because of it. I participate in charity work for breast cancer and the food bank. I feel very healthy and want to give to others while I can. This newsletter is very helpful to myself and my family. I appreciate the myths about cancer. Thank you so very much.

  - Maggie

• June 23, 2011 11:37 a.m.

  I have accepted my diagnosis. As grim as the prognosis is I feel like I am giving cancer a good fight! My family can't help but worry and it helps us all that they are near. I feel like my role is also in helping them accept the inevitable. Nothing about dying is easy but the same could be said about life. Someday I will decide when I will be stopping chemo - it will be my decision, I have completed my living will and discussed funeral arrangements. At 45 years of age I feel like the best way I can support my family is by helping make those tough decisions. I'm not ready to die, I'm just prepared.

  - -EJ